Talk To Uncle

What Frontotemporal Dementia took before it took my mother

My mother makes the best mooli ka paratha in the world.

Made. Makes. I don’t know which tense to use anymore.

Frontotemporal Dementia (FTD) doesn’t care about verb tenses. It just takes. Until the woman with the same hands, same long choti, same face—looks like my mother but isn’t.

And I’m supposed to be grateful she’s still here.

The Things I Didn’t Get

I didn’t get to say goodbye.

Not because Ma died. But because FTD doesn’t believe in clean endings. There’s no hospital scene where I hold her hand and whisper, I love you and she whispers it back.

There’s no closure. Instead, there’s this: a slow erosion. A gradual emptying. A person who looks exactly like my mother but doesn’t know why I’m upset when she asks—for the seventeenth time today—where my father has gone. (He has gone to the dentist's appointment)

I didn’t get one last mooli paratha. The one crispy on the outside, soft in the middle, the radish grated just right. I never wrote the recipe. Never watched her make it. I thought I had time.

I didn’t get one last cup of her chai. Lemongrass and ginger, less milk, with exactly the right amount of sugar. She used to bring it to me without asking, knew exactly when I needed it.

The other day, while we were speaking, she suddenly handed the phone to my father and told me: Talk to Uncle.

Uncle.

I didn’t get one last real hug. The kind where her arms wrapped around me, and I felt like a child again. Safe. Now, when I hug her, she pats me politely. Like I’m a well-meaning stranger.

Because to her, I am.

A stranger who should speak to uncles.

With my parents and elder sister,

The Cruellest Part

The cruellest part isn’t that she’s gone. It’s that she’s here. Right in front of me. Breathing. Pacing. Existing. And I can’t mourn her.

People say, “At least she’s still with you.” And while I get it, I want to scream: No, she’s not.

Not because she forgot me. She knows exactly who I am. But because FTD didn’t steal her memory. It stole her personality. Her temperament, her kindness, her calm nature. Instead, I get screaming. Accusations. Rage that comes from nowhere and everywhere.

People think dementia means forgetting. A sweet, confused elderly person living in a fog. That’s Alzheimer’s. FTD attacks the frontal and temporal lobes; the parts of the brain that control personality, behaviour, empathy, anger. The woman who never swore now hurls abuses. The woman who was endlessly patient now has tantrums like a toddler. The woman who always put others first now screams that everyone is against her.

She’s here. But she’s gone.

And I don’t know which is worse.

Watching someone forget you, or watching someone become someone else entirely. Or what to do with the shock I experience. Grief, I can handle, but this person I don’t connect to my Ma, where do I take my shock? She would have known.

With my partner in crime, Ma.

The Anger

I’m so angry.

I’m enraged at the disease, obviously. At the universe that decided this was how my mother’s story would end. When she finally had the chance to “live” her life, it wasn’t with a bang, but with a slow, cruel fade.

But I’m also angry with her. And I hate myself for it. The guilt of that is suffocating. Angry that she won’t let me help. That she makes everything so hard. That every visit is a battlefield, and I leave exhausted and hurting.

I know it’s not her fault. I know that. But knowing doesn’t make it hurt less when she looks at me with rage and says things Ma’d never say. Not always directed at me, but in my direction.

I’m angry that she can’t follow a conversation anymore. Angry that I have to grieve her while she’s still alive. That I have to be strong, patient, and kind when what I want to do is scream, “Come back! Remember me! I need you! I want my mother!”

But she can’t. And screaming won’t bring her back. So, I swallow it. I smile. Swallow the rage at FTD for stealing my mother.

When we were young

What I’m Learning

I’m learning to keep showing up, hoping for a glimpse of the woman she used to be. Sometimes, I get it.

A moment where she looks at me and I see her, my Mumma. She’ll touch my hand gently. Or laugh at a joke. The other day she looked at my book and said, I really liked it, and I am so proud of you. Where is your second novel?

And for those ten seconds, I forget all the pain. I think maybe she’s still in there. Maybe she’s coming back. But then the moment passes. The stranger wearing my mother’s face returns, angry again. And I’m left holding that ten-second memory like it’s the last piece of her I have left.

To my mother. I’ll always love you. Even when you scream at me. Even when you push me away. Even when it breaks me.

Because you’re still my mother. Even when you’re not yourself anymore.

I love you, Mumma.

Even when you can’t love me back.

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If this feels (or felt) familiar, you’re not alone. Maybe, reach out to me if it helps.